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ALSPAC: A Premier Resource for Social and Health Researchers in the UK

The Avon Longitudinal Study of Parents and Children (ALSPAC), initiated by Professor Jean Golding in the early 1990s, is a pioneering birth cohort study aimed at understanding the interplay between genetics and the environment in influencing health and development. Known widely as the “Children of the 90s,” ALSPAC has followed over 14,000 children and their families, collecting extensive data through questionnaires, clinical assessments, and biological samples. The study's findings have significantly influenced public health policy and established it as a vital resource for researchers seeking insights into health and social issues.

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ALSPAC: A Premier Resource for Social and Health Researchers in the UK

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  1. Showcasing ALSPAC as a resource for social and health researchers

  2. ALSPAC The Avon Longitudinal Study of Parents and Children A brief history & introduction

  3. ALSPAC: Study History • Established by Professor Jean Golding • Initial funding from the Department for the Environment • Need identified at WHO Europe conference in Moscow for a series of pan-European cohorts with comparable design and data collection tools - ELSPAC • Known to its participants as ‘Children of the 90s’ “To determine ways in which the individual’s genotype combines with environmental pressures to influence health and development” Golding 2001

  4. ALSPAC: British Birth Cohorts • 1946 ‘National Birth Cohort’ (NBC) • 1958 ‘National Child Development Survey’ (NCDS) • 1970 ‘British Birth Cohort’ (BCS70) • ALSPAC 1991-1992 • ‘Millennium Cohort Study’ (MCS) • 2012 Birth Cohort Facility

  5. ALSPAC: defining characteristics • Regional catchment area • Permanent study center in Bristol • Multi-generational • Health and genetics ‘reputation’ • Extensive social measures

  6. ALSPAC: defining characteristics • Extensive biobank • Intensive and frequent follow-up • Used as a sampling frame • Expanding record linkage arrangements

  7. ALSPAC: Eligibility • Pregnant women resident in Avon (excluding the city of Bath) with an expected date of delivery between 1st April 1991 and 31st December 1992

  8. ALSPAC: Sample size • Core participating sample of 14,541 pregnancies resulting in 14,062 live born children • ~ 8500 young adults participated between ages 16-18 • 10 000 children attended at least one clinic • Outreach clinics are helping to boost numbers and target young people from socially deprived areas

  9. ALSPAC: The resource • Questionnaires • Hands-on Clinical Assessments • Biological Samples • DNA & Genotyping • Record Linkage to routine information • Future Collections

  10. ALSPAC: Questionnaires • 17 questionnaires about the mother • 23 mother completed about the child • 22 questionnaires completed by the child • 15 questionnaires completed by the partner • Many other single topic or sub-sample questionnaires • 10 Puberty questionnaires between ages 8 to 18 • Web based data collection • Questionnaires administered in schools

  11. ALSPAC: Clinical Assessments • ‘Children in Focus’ • 10% sub sample • 10 clinics between 4 – 61 months • Focus Clinics • Open to all eligible study children • 9 clinics from age 7 – 17

  12. ALSPAC: Clinical Assessments • Mothers clinics • Opportunistic data collection at child focus clinics • First mothers clinic running from 2009-2011 • Funding secured for two further waves • Fathers clinics • Some opportunistic data collection • Funding secured for first fathers clinic

  13. ALSPAC: Biological Samples • Collected since pregnancy • Blood • Urine • Hair • Nails • Teeth • Saliva • Placenta

  14. ALSPAC: DNA & Genotyping • DNA extracted for over 10,000 children and mothers • Cell lines produced for ~7,000 children and 6,000 mothers • GWAS, expression data and shortly whole genome scans on a sub sample of 1,000 – 3,000 cases

  15. ALSPAC: Record Linkage • Linkage to health and administrative routinely collected records • Primary Care Maternity and Birth records • NHS/ONS Flagging and Tracing service • Death notification & Cancer registration • Education records • National Pupil Database (NPD) census and attainment records • GIS & Environmental Measures • ALSPAC Friendship Matrix

  16. ALSPAC: Future Collections • Continuation of data collection from the ALSPAC index children and their mothers • 3rd Generation ‘Offspring’ pilot • Fathers recruitment & first clinic • Sibling recruitment • Development of the biobank and genotype resource • Expanded data linkage to routine records

  17. ALSPAC: Principal Findings • Verified the safety of the ‘Back to Sleep’ campaign that led to the reduction in rates of cot death • Findings led to a reformulation of topical creams to remove peanut oil • Policy Impact • Changed US government advice re eating fish during pregnancy • Evidence of lack of change in social mobility • Genetic & Epigenetic research • Helped identify common genetic variants that relate to traits such as obesity • Data used in exploration of new field of Epigenetics

  18. ALSPAC: Data Access • ALSPAC committed to moving towards ‘open access’ solution • UK Data Archive - pilot data sets • MRC DSS - ALPSAC meta data • Current access arrangements detailed on ALSPAC web site: www.bristol.ac.uk/alspac/sci-com/collab-policy/

  19. ALSPAC: further information • www.bristol.ac.uk/alspac • Detailed summaries of the resource • Data access policy • Links to further information

  20. PEARL Project to Enhance ALSPAC through Record Linkage

  21. PEARL: The PEARL Team • A Wellcome Trust funded project • Part of the Electronic Patient Record (EPR) series of grants • PI: John Macleod • Other team members: • Andy Boyd • Kerry Humphries • Kate Angel • Lindsey Brown

  22. PEARL: Benefits of Linkage • Cost effective • Comprehensive source of data • Obtain data that is less subject to self-report or participation bias • Inform strategies for dealing with missing observations • May help avoid study fatigue

  23. PEARL: Project Goals • Obtain consent for and establish mechanisms of linkage • Investigate challenges and develop generalisable solutions • Demonstrate the value of linkage-based research through exemplar projects • Establish a training programme to share these methods and insights with other researchers

  24. PEARL: Data Sources • Health data • Patient level primary care records • General Practice Research Database (GPRD) • Hospital admissions data (HES) • Work and Pensions Longitudinal Study (WPLS) • Employer, benefits and income data • Ministry of Justice • Criminal convictions and cautions records • GIS (Geographic Information System) • Data to inform spatial analyses • Education data • National Pupil Database (NPD), Further and Higher Education

  25. PEARL: Governance Structures ALSPAC NHS Other Data bodies owners Executive REC ICO ONS DWP HMRC AL&EC NIGB Section 251 DfE & BIS MoJ

  26. PEARL: Research Governance • Concerns: • Privacy & Cohort acceptability • Trust, duty of care • maintaining the long term relationship • Research ethics • Legislation • Data Protection Act • Data owners • Balance: • Right of privacy against right of public goods

  27. PEARL: Pseudonymisation • Anonymisation • Is anonymisation possible in this context? • Pseudonymisation • Removal of personal identifiers • Restrict precision of geographical scale, date of birth • Assign new unique key number • To each participant • To schools/employers/health facilities etc • Suppress/Transform small cell counts

  28. PEARL: Pseudonymisation in practice • Balance between privacy and utility • Deductive disclosure still possible • Does pseudonymisation meet the requirements of the DPA / data owners?

  29. PEARL: ALSPAC Linkage Protocol • ALSPAC will continue to Pseudonymise data • ALSPAC will continue to mitigate risk through data usage agreements with data users • ALSPAC will seek consent & meet fair processing requirements • Governance & infrastructure to control for security risk • ISO27001 & HMG Security Policy Framework • Staff training • Investigating governance frameworks & accreditation • NHS Information Governance Framework and ‘Data Safe Havens’ • Investigate technological solutions • DataSHIELD, SAIL

  30. EUCCONET Data Linkage Workshop • Bergen 15-17th June • Focus on linkage in Child Cohorts • Linkage theory • Governance and disclosure control • Consent • Exemplar projects

  31. Questions? Andy Boyd ALSPAC Data Linkage Manager a.w.boyd@bristol.ac.uk

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